Monday the 28th of August 2017
I knew starting off today that it would be yet again a busy day. There were lots of visitors scheduled for coming up to Dublin to see me today! Today was also the day I was to get my hair shaved off! This wasn’t until the end of the day though. I was feeling good thankfully, a little stronger than yesterday even. My appetite was starting to come back a little too which is good as it had been completely gone all week while on the chemo and after it. It felt so good to be gradually loosing the metallic taste of everything. Literally everything tasted metallic while on the chemo and it was horrible! It meant that everything that used to taste good to me, now no longer did! And things that I never would have eaten, like rice pudding, were now all I could eat. There was a pattern starting in the morning’s where between 11 and 12am Saturday, Sunday and again today, after eating whatever breakfast I got in, I would vomit. As they noticed this pattern, it was nipped in the bud and I was put on an anti sickness tablet regularly throughout the day. This was good as it also took away that horrible feeling of nausea which we all know too well as not being too nice! It felt so good to be able to eat again and to have an appetite. The smell of things which had gotten so sensitive, was also improving thankfully!
I had some family members visiting me in the morning. It was lovely to see them all however it was around the time I was feeling sick to start with so that part wasn’t ideal. I’m not entirely sure if I mentioned in last weeks blog about the fact that my leg had completely swollen up over the weekend. They were first concerned it could be from all the fluids I had been on, that the drainage mightn’t have worked and it went to my leg. They then started to become aware that it might be another blood clot. As soon as this possibility arose, I was organised for a CT scan today. I had to leave all the visitors to head off for yet another CT scan. Nothing new for me. I met lots of people down in the radiography department that had met me the week previous when I was having all of my repeat scans done and getting my Picc line in. They remembered me and said I was looking great considering the week I’ve had! It was lovely to meet them again and update them on everything. It put me at ease. They are all just so lovely here in the Mater I really can’t express that enough! The scan was quick enough and I returned back to my room to more visitors!
By half 8 Colleen had arrived to do my hair and the time had finally come. I really didn’t know how I was going to react to loosing my hair and to be completely honest I half expected myself to be a mess! To my surprise and everyone else who was there to witness it, I was smiling the whole way through it. I somehow got more strength from somewhere when I needed it most again! Because I was happy, everyone else was too and it wasn’t half as emotional as I thought it would be. I mean, it is a massive thing, getting your hair completely shaved off. But I think the fact I knew it was to come and I had been told the type of Chemotherapy that I was having would definitely make me lose my hair, meant I had mentally accepted that this was how things had to be. I was mentally prepared, and as I’ve mentioned before, for me that’s half the battle to being strong! When I looked in the mirror for the first time, I surprised myself in actually liking it on myself. I thought I would have a horrible shaped head, but it actually isn’t so bad after all thank god! It’s weird how quickly I got used to seeing myself without hair. It became the new me. The look just goes along with the new me that was coming with this disease. A stronger version of me. Everyone loved the hair(or lack of it), the family and even Oisín thought it really suited me! There were plenty of photos taken and then by the end of the night, there was a very tired Niamh. That was one busy day!
Tuesday the 29th of August 2017
I was luckily feeling good today. Waking up without hair felt slightly weird and it took me a moment to figure out what was happening and to get used to looking at myself again throughout the morning. But I adjusted to it once again. I knew once again that there were a few things on so I was up early and ready for it. The doctors were in as always nice and early. They were happy with me so far and said the next few days were when my vulnerable period will start. My blood counts would all soon start to drop. This in return leaves me more vulnerable to infections as I wont be able fight them off as easy as if I had my usual high blood counts. Knowing it was to come meant I could just be extra careful and come in to as little possible contact with people during the week. The doctors still made it clear to not hide away and to get out and live when I’m feeling good. So I listened to this advice too all the same. My swelling in my leg was thankfully starting to go down an awful lot which is a great sign. I got the news later on in the day that the results of the CT scan showed that there is no blood clot in my leg. However the one on my lung has gotten bigger, which is annoying! So they made the decision to put me on two injections now instead of one. I am giving them to myself now anyway so it just meant one in the morning and one at night instead of just one in the evening. I didn’t mind so much when they said this should work more effectively. The fact I now give them to myself also makes it easier as I feel more in control. There’s a lot to be said for self control, that’s one thing this is massively teaching me!
A company in Dublin called Roches, which provides wigs for people with hair loss from cancer and alopecia, called in to see me this morning. A lovely lady that works for them called Siobhan, was in charge of helping me out with picking my wig! She was so so helpful. I tried on lots of different wigs, all fairly similar to the cut and colour that I always had. I ended up going back to the very first one that I tried on as it was most like how I used to look. It was my favourite so I just went back to that one and said I wanted it, it was perfect. I wasn’t going to be wearing it often but it was still great to know I have one now for when I felt I wanted to go back to looking how I always looked. I at least now have the option or choice. To my surprise, later that day, Siobhan called my Mam. She said she found me very inspirational today and for my age she thought I was very strong. She was wondering then if I would be interested in talking to The Irish Times for a feature article that they were doing on Roches. It was on the following Monday. I said I would think about it as it seemed quite daunting and massive at first! They would be talking to a few others that have cancer and alopecia, but I would be the youngest. I was also told I can completely say what I want and I don’t have to talk about everything they ask if I don’t want. I was going to think about it regardless and see how I felt after a while about it, it all just seemed so daunting for me right now!
Wednesday the 30th of August – Friday the 1st of September 2017
Today, Wednesday, was the first day I was at risk of infection starting as a result of my blood counts dropping. They would gradually start to drop from today onwards. This is normal of course after chemo. Because of this I sort of had everyone warned that these coming days would not be ideal for visiting me. But none the less, people wanted to see me before I was at my most vulnerable and so today was planned for a few family members to come up and see me. I was feeling good and wouldn’t have even known my blood counts were low only the doctors told me! Which is normal for the start of it apparently. I ended up leaving the ward for the first time for a reason other than going for scans, I got out as far as the café in the hospital! This was even massive for me since all I had seen of the place was the radiography department and my ward. It was lovely to have extended family members there with me too to enjoy it with. After I got back and the visitors all left it was a busy afternoon and evening too with physio and social workers and what not. I was wrecked after my day and happy to get to sleep early that night!
Thursday and Friday were fairly uneventful days so I’ll only touch on them! The main emphasis on them is that my blood counts were dropping fairly fast and fairly low. They were concerned about my platelets and white blood cells in particular. There was a possibility over the weekend I would need a blood transfusion of platelets but it wasn’t guaranteed at the same time. The main risk in all of it was just me picking up an infection, but at the same time, they said I am allowed hours out of the hospital and my doctors are all for living and enjoying quality of life while I can! This I was delighted to hear because I was getting so sick of being constantly stuck in the hospital grounds. It’s been 3 weeks today since I was admitted to Sligo Hospital with the worsening pain. And I have many weeks ahead of the hospital life so I may as well get out for hours while I’m feeling good!
Saturday the 2nd & Sunday the 3rd of September 2017
Today was again, a good day! I was feeling great once again and the pain being pretty much completely gone now aside from the odd reminder which came very rarely, meant I felt better than I have felt for months! Today I had a lovely stress free relaxing day with Mam, we played cards and board games and I even spent some time doing adult colouring. (I’m a big child at heart, please don’t judge!) I was feeling so great we decided to go out for some dinner in the evening. Some normal, nice food that wasn’t hospital food was extremely appealing to me! My appetite has by now come back and it was tasting better than ever now after the week of everything tasting metallic. We went to a local pub that does really good food, Mam and Dad by now know the places that are nice as they are always up here with me and they have to eat! So I took Mam’s advice and we went to the place she recommended as good. I didn’t feel like wearing my wig so I wore a hat instead. I felt it for the first time walking in the doors of the pub. All eyes on me. Or at least that’s definitely how it felt anyway. I guess it probably seemed worse than it was. But I think I had sort of forgotten that I’m different now and almost wasn’t prepared for everyone to stare, because I’d gotten so used to it just being people in the hospital who see me, and they’ve all adjusted to seeing me this way. I got used to the people looking and I didn’t care anymore. I was there to enjoy my food, and I sure did! When I also got used to the feeling of not being the same as before, I felt at ease and happy. Happy to now be feeling so good as to be able to actually eat out somewhere nice and enjoy good food. It’s the small things! They are now massive to me. When I got back to the hospital, I was very tired and my pain in my leg was annoying me. But I suppose that was to be expected since it was my first day out, even if I wasn’t even gone two hours.
On Sunday, I felt wrecked even waking up. I was told as the day went on my blood results showed my platelets were at the worrying stage now and so they were saying that the blood transfusion might be on the cards for today or tomorrow. It made sense for me to be feeling as tired as I was because of my bloods. I just wanted to sleep. I had a few visitors today and it was lovely to have them regardless of feeling tired. My sister Emma came up and I hadn’t seen her all week so it was lovely to see her and to catch up! I improved as the evening went on and I enjoyed watching the hurling final with my Dad. It was an enjoyable day in the end and there was still no blood transfusion so the tiredness continued but that’s nothing worth complaining about! I had agreed over the weekend to doing the interview tomorrow with the Irish Times, so as the evening went on, I was feeling nervous about the morning and what it would bring! But I tried to not think about it too much as I knew I would only say what I wanted. And this whole situation has changed me as a person, so this is something I can probably do no problem now, where as its something I would have struggled with 3 months ago!
Monday the 4th of September 2017
Today was the day of the interview with the Irish Times! They had told me it would be around 10:30am. I was nervous enough when I woke up, but between doctors and nurses coming in, the morning flew by and I hadn’t much of a chance to think about it. The time started to pass and it creeped past half 10. Myself and Dad, who was up with me until Thursday this week, played some board games while we waited. Something that turned out to be quite fun! By two o’clock, in arrived The Irish Times editor, Jennifer O’Connell, the owner of Roches, Anne Roche, and a photographer called Dara. The interview went really well and the editor was so lovely in every way, extremely sensitive to my feelings, and didn’t ask or expect too much of me. I completely led what I wanted to say and any questions asked, were answerable. I couldn’t get over how well it went and how ok I was at talking. I thought I’d completely freeze at certain questions or that I’d rant on about certain things that were of no interest, but I think I just gave the right amount of information and I didn’t over do it. It was an experience to say the least. Not something I thought I would ever have to do. But something I actually enjoyed. It was nice to tell my story and feel good about myself for telling it in such a positive way. If I can raise more awareness by further sharing my story aside from here on my blog, I will! The article will be in the feature article section on the 23rd of September as far as I know, for anyone who wants to read it!
As surreal as the interview was and hard to believe it had happened, once it was over, the day just went back to reality. Back to talking and wondering about my bloods and what not. They were thinking I might need to have a blood transfusion before the day was over, but then they decided to take my bloods again to see if they were still as low. After a few hours of having heard nothing, I went and asked them if I was having my blood transfusion or not, and it turned out that my bloods had now surprisingly started to go back up themselves! I was delighted. This was a good sign as I was now bouncing back quicker than they even expected! They had predicted Wednesday would be the day my blood counts would start to recover themselves. I bet the prediction by two days, for me that was a great sign! I was feeling great along with it, no sickness even, and my appetite was starting to improve massively. I just knew myself by now that I am definitely strong enough to fight this horrible disease. I’ve got it in me. I knew I had but now I’m starting to believe it even more each day. My pain has now gone from being at a constant 5-10 to only a 2 every so often! Such a difference.
Tuesday the 5th – Thursday the 7th of September 2017
Tuesday was another day of plans. I started the day off with a relaxation class that was on in my ward. I really enjoyed it. It did exactly as it says in the name, relaxed me. It was all about visualisation, and I really found it worked for me! After this, I had a make up workshop run by Look Good Feel Good. I really enjoyed this too, of course as a 19 year old, make up is an interest of mine! Learning what is ok to use and what isn’t now that I’m on chemo is important. I got to be the model, so the skin care and make up was all tried out on me by a lovely make up artist. There were 12 of us altogether, but I was the only in patient, the rest were all out patients who had come into the hospital especially for it. It was really nice to meet others going through cancer and to get to chat to them about similar problems and experiences. Just as I thought it was coming to an end, who walked in only the lady from yesterday, Anne Roche. I wasn’t expecting to see her again so soon! She was here to answer any questions about natural appearance and wigs. It was so nice to get chatting to her again! She thanked me for yesterday and told me I did really well and that I’d really impressed the editor and photographer from The Irish Times. I couldn’t believe that they felt that way.
Wednesday morning brought with it busyness too, no different to the previous day. I had a visitor from Boyle, Sean O’Dowd from RealBoyle, the local website. With the town getting together to so generously organise and host fundraising events to help myself and my family through this tough time, I had decided I would like to make a video for the launch night of the fundraising which was coming up on Friday the 8th. The idea behind the video was to thank everyone as best as I could, since I’ve been away from home for so long now that I haven’t been able to thank anyone properly! I also would have loved to be able to attend the launch night to thank and meet everyone personally. This wasn’t obviously possible, as I mentioned in the video. So the next best thing was to have this video for the night itself! Sean O’Dowd offered kindly to do the video, and he came up this Wednesday morning around 10am to take it. I was a small bit nervous but once I got into it I was grand. I knew what I wanted to say, I just wouldn’t be the best at public speaking, so there were a good few buts and em’s and eh’s, but I managed to pull a few sentences together anyway and it did the job and I got my point across, at least I think I did anyway! I had plenty of visitors all day after this, it was a busy day! I was also told I am allowed hours out as my blood counts are all coming back up! I took full advantage of this and I went out for lunch with my sister Emma. We visited a café just up the road called The White Moose Café. The two men that run it are Snapchat famous and I was hoping they would be there and that I’d get to meet them as I really enjoy they’re Snapchat. Since I’ve been sick I’ve deleted most vloggers on Snapchat, because of just not having the patience or time to watch them all, but I kept them as I just find they’re way of living and approaching life admirable! Unfortunately, this was they’re day off and we didn’t get to meet them. The food was still so good and I was happy to see the place! Another time, after all I’m going to be here a lot now that my chemo is in Dublin.
On Thursday myself and Mam went to the city centre to go to the cinema. I really enjoyed it. Something that I used to do so often was go to the cinema, and now its something I couldn’t even remember when I’d done last. I really appreciated every last moment of it more than ever before. From the taste of the popcorn which I now luckily have the appetite for, to the whole momentum and feeling you get when the lights go down and the movie starts and you get a sort of excitement for the unknown. I just noticed so much more than ever before! After the movie, when we were as far in as we were, we said we would have a little look around some shops. Hopping along on the crutches made everything about this awkward however. After the second shop, I had enough of trying to get through people. This was annoying as I otherwise enjoyed the whole feeling of it being normal to be 19 and go shopping. The enjoyment of seeing a top that I liked and thinking maybe I’ll get it. These were the types of things I should be doing when I feel like it. Not sitting in a hospital room twenty four seven thinking about what’s to come next medically for me. Not being in any way bitter about things though, in case that’s how it sounds! It was just so nice to feel a sense of normality again.
Friday the 8th – Sunday the 10th of September 2017
Friday turned out to be quite a significant day, for the reason I was told I can now walk without my crutches if I feel I’m able to. I was never so happy when I was told this! I finally have more independence back. Crutches have meant I can’t use my hands for anything at any time when I want to get from A to B. They have been a nuisance. I had a bad night of sleep last night and that meant I wasn’t in the best of form waking up, but to get the news that I’m allowed to walk around crutch free, put me in as good of form as I could be! I had physio in the morning which went really well. I went for my first walk around without the crutches with her and she was so happy with the strength in my bad leg! She said she would do up a programme of exercises for me to now start doing to strengthen up both my legs, my pelvis and my core. It would be really important for these areas to all be strong for after surgery. I was actually happy to hear this as with all the free time I’ve got now, I’d like to be doing something useful for the future, especially if it helps with my recovery. The doctors are all very happy with me too as I bounced back even quicker than they’d expected from my first cycle of chemo. With cycle two starting next Wednesday, the 13th, they told me to enjoy my weekend and get out as much as I wanted. On this Friday evening I listened to them and I put on nice clothes, my wig, and even wore make up! Myself and Mam headed out for dinner. We went to a lovely restaurant and it felt so nice to feel not sick, it just felt like old times. I felt like the old me, I even looked as close as I could to the old me! I was starting to get a small bit of a sniffle in my nose, but decided not to worry, as that’s normal for someone who’s immune system has been down. When I got back to the hospital I was wrecked, but it was worth it as I’d really enjoyed my evening with Mam. The small things, as I keep mentioning, are so much more impressionable on me now! Knowing the fundraising launch was on for me tonight back home had me completely on edge for the night. I couldn’t stop wondering what it was like and just feeling curious about it in general. It just felt like a dream that all this was happening back home for me… I just didn’t know what to do with myself for the night! I couldn’t get to sleep thinking about it all, I kept waking up thinking it was morning and hoping to ask someone about how the night went. I had a few messages from people at different stages of the night to tell me that the place was packed and the night was a huge success. I couldn’t believe it. I got a few videos on Snapchat showing how full the place was, and it was so surreal to think that all of those people were there for me. Unbelievable. That is the word that kept coming into my head. I got emotional at the thought of it all.
Saturday morning I woke up with a massive headache after the bad night of sleep. I didn’t mind as the reasons were unavoidable. I also woke up to numerous messages. My Mam came down to me around 9 and she got so many calls all morning from the family who filled us all in on the night. Chris O’Dowd had actually arrived at the fundraising launch for me! This I could not get over!! It was one of the biggest crowds The Saddlers has apparently had. How remarkable this was. The whole community got behind me. I really cannot thank you all enough. Anyone who took part in organising the event and who went along to support me, you are all amazing. I really will be forever thanking people! The town of Boyle and local areas are something else, the numerous other fundraising events that have been held for me over the weekend, between a static cycle from Boyle to Birmingham and back to Boyle by the Curlieu Wheelers, a coffee morning in Brogan’s Totalhealth pharmacy, and a family funday by Boyle Celtic. Wow. The GoFundMe page which was set up has also been doing unbelievably well, thanks to all the kind donations made by everyone from far and wide. Thank you to anyone who has even in the smallest way contributed to getting us through this tough time, by donations and your extremely heart felt good wishes. I really don’t know how I’m going to thank everyone enough. I only hope that on my good days and when I get to go home for a few days in between chemo’s, that I can make it to some of the many more events which are being planned in my name, to thank everyone personally. I will do my very best to make it to some of them and meet the people who have been so good to me. I know so many are now following my journey and are reading my blog weekly, and so you probably feel like you know me in a close way even if you didn’t ever know me before. I would love to meet and get talking to people who feel my blog has had a positive effect on they’re life. As that’s what I hope this can do for people. If it can help you to appreciate your life for what it is and not what it isn’t, then I feel I’ve achieved my main goal here.
The day consisted of my lovely grand aunt Liz calling to see me and my Mam. We went for a really nice lunch and she filled me in on her knowledge of natural and organic products as an alternative to using products with chemicals. She really is brilliant help through all of this. If your reading this Liz, thank you. You’ve been such good help and guidance through this from day one. It helps so much to have people who know about the right from the wrongs when it comes to chemo. It’s all still so new for us so any bit of guidance is always good! I was so tired after lunch after having two bad nights sleep, that I went for a nap in the middle of the day. It was needed and I felt a lot better after it. When the night nurse came on duty and I explained about how tired I’ve been, I asked her if I could have my tablets and do my injection earlier tonight than usual as I needed an early night. She was so lovely about it and said no problem and even offered to put all the usual callers off coming in to me in the morning so that I could sleep in until 9am rather than the usual of being woken up at 6:30am and every half hour by someone else for some other reason between breakfast and water and what not. I happily took her up on this offer!
I woke up Sunday morning feeling refreshed. I had the best nights sleep. I got 10 hours when I counted it, but boy did I need that! I had a busy day of visitors lined up so I was happy to not be feeling tired anymore. It was from one visitor to another all day. When it got to midday, Oisín, Dad, Emma and David were all there. Mam had been with me the last few days, so now I had the whole family together for the first time in two weeks. With us all being together, we went for a nice dinner and it was so good. All together again, and for the first time in ages we were able to do something nice as a family outside of a hospital. I really appreciated every small thing about this day. I may have complained about some things and went on as my usual self, but I stopped so many times to look around and think how perfect everything about today was. I had my perfect family and boyfriend with me and we were able to enjoy each others company, with me being pain free for the first time in a ages. The only thing to put a downer on the day a small bit was the fact my head cold got worse when I got back to the hospital, and my throat started to feel sore. But I didn’t let this get the better of me! I still enjoyed the company of everyone until it reached the time for them to go home. I was sad to see them all leaving, but at the same time I was wrecked and I needed a nap, so I was happy to get some sleep after they all left. The next significant thing to happen tonight was my hair started to fall out. The stubble on my head that was actually growing over the last two weeks since I had it shaved, was now shedding away each time I pulled at it. This was a milestone. An inevitable one. Dad stayed with me and we had a nice relaxing evening and things went back to being quiet. The whole routine here just starts to feel so normal. I’m three weeks here now and it feels every week of it, but at the same time the last two weeks of it have flown, it was the first week that dragged! I’ve gotten to know everyone here on first name terms and I’ve built relationships with them all. Even with other patients. I’m the youngest on the St. Vincents ward, but we all have cancer here. So we can all relate in conversation to how it feels to be going through the treatment and just how it feels to have cancer in general. It helps to talk to people going through it. Everyone here has to stay for long periods of time, we are all in the same boat. This makes things so much easier. So I have to say I’m as happy as I can be here, as the care is excellent along with the people here. It has already become normal to be here and I’m making the best of every day, taking it in my stride! It’s the only thing to do. As I’m starting to see so much more each day, the mind comes along side the body in a massive way. That’s why it is so important to have a positive mental attitude towards anything strenuous in life. What good does being negative have on an already unfortunate situation!